Monday, May 23, 2011

Let me preface this post by first saying that it is rare that I use this blog to rant. That said, a dose of the day to day never hurt anybody. Maybe it's the mosquitoes or the monsoon rains we've been having, but I'm feeling feisty. Isaac has been in his usual picky eating mode today. When he asked for a bed time snack tonight I saw it as a chance to get some more protein into him. I asked if he wanted some of the turkey kielbasa that was leftover from Andrew and I's dinner. Yes, he did. I heated it up and cut it into little pieces and he liked it immediately. "Win!" I thought to myself. Then the panic set in. Wait- did I read the label on that sausage before I gave it to him? I rushed to pull out the package from the garbage and scanned the ingredients. Monosodium glutamate stared me in the face. I grabbed the meat back from Isaac saying "Sorry, mommy was wrong. This will make you sick." He pouted a little, but looked like he understood. MSG: is it gluten or isn't it? The internet is no help with it's conflicting opinions. I found this http://www.gfcf.com/articles/msg-restaurants.html article and have decided that I'm glad he only got away with eating two pieces of the meat before I took it away.

Let's hope he sleeps well tonight and has good behavior tomorrow. That's all I can say. No, wait. That's not all I can say. I can also say that sometimes it gets annoying that I have to dig things out of the trash to read labels, and that Isaac's college fund is being trumped by gfcf food prices. I can say that I hate that my child's ability to function is dependent upon my ability to read food labels, and that I hate feeling like the mean mom when I have to take food away from him. I can say that sometimes it's annoying that nothing is really simple for us, and that it's hard to explain to people who don't get it. This does not exclude doctors. I had a physical today. I think it was just an excuse for my family practitioner to get a second look at my mystery bug bites and be able to bill my insurance company at the same time. We were going over my medical history and what surgeries I've had. The tubal ligation came up and she asked in a mock-sensitive way if I just didn't want anymore kids. She even tilted her head to the side and softened her voice like she knew she was treading somewhere kind of muddy with a woman who may or may not be a little hormonal. "You were so young when you got it done" she said. "Yeah, I was really sick when I was pregnant with Isaac and we thought we'd adopt after him. And we tried fostering and Isaac has PDD-NOS. And..."

I wanted to ask if she had a couch and a degree in counseling, because that is what it's going to take to excavate this topic with me. The short answer is that, of course, we'd love to have another kid. We'd love to be able to not worry about being terminally ill again with another pregnancy. We'd love to not have to wonder how we'd manage (financially and otherwise) with another kid on the spectrum, if that's what happened. We'd love to say that it wouldn't bother us if that kid was completely normal and Isaac wasn't. Just like we'd love to say that the topic of this article wasn't very real and present in our thoughts and conversations these days. We'd love to say that we don't sometimes feel cheated out of what is such a simple question for other people, but sometimes we do. And that, my friends, is why finding MSG on a food label makes me angry.

Saturday, May 14, 2011

I found this post in the Autism Reddit today. It's by a mom who had a bad Mother's Day out in public with her autistic son, not because of his behavior so much as the comment from a stranger. I've been this mom and I feel for her. Apart from wanting to tell her that the ice cream probably wasn't doing her son any favors that day, I want to tell her that she's not alone. People can be jerks. Since Isaac was diagnosed I tend to be less judgmental of people with kids melting down in stores, running around like crazy, etc. You just never know the whole story, and giving someone the benefit of the doubt is the kindest thing you can do in that situation. Hold the door for them while they exit with said kicking child, smile, and don't you dare stick your nose in the air like you are parent of the year. Anyway, here is a pretty typical public scenario when trying to take a spectrum kid out to eat: http://www.reddit.com/r/autism/comments/h6xvy/my_son_showing_signs_of_autism_and_assholes_in/

Isaac will still have moments, like today, where the crowd at the mom to mom sale was a little overwhelming and he felt like and did run for the door without me several times. This is TAME compared to some of our past public incidents...like at library story time. Or how we used to have to avoid play dates too close to ponds, lakes, rivers and the like because he would relentlessly try to get in them. I'm happy to say those days are mostly behind us, and unlike the poor mom who wrote the post on Reddit I had the best Mother's Day ever. Would you like to hear about it? Of course you would.

My last minute husband who usually does little or nothing for this Hallmark holiday decided to get it together this year. Maybe he was feeling appreciative for all I've been through this past year...or maybe he was feeling competitive since I gave him an early Father's Day present already. I had a landscaper come out and do a spring clean up of our large yard- including the scary job of cleaning out the gutters on our two story house. Either way, he managed to make this Mother's Day better than average. He stayed up late the night before and prepped a fancy picnic- including special bread for Isaac. We packed it up and rode our bikes out to our new favorite park on a country road near us. The weather was warm and sunny, the scenery something like a modern Little House on the Prairie. Cute houses spread out between rural stretches of land, mature trees and flowers in bloom, and a perfectly behaved little boy in tow.

We ate our lunch and then Isaac began playing with a nine year old boy at the park. You can always tell an only child, especially if they are psyched to play with other kids- even a 3.5 year old boy pretending to be a crab. And this little boy, Michael, was just such a boy. He put up with Isaac telling him that his name was Isaac Crab and didn't ask why our weird kid would not break character or stop pinching at him. We watched as Isaac happily played games with this boy, climbed without our help, and did all the things almost four year old boys should be able to do. Andrew and I watched and reminisced about how terrified Isaac used to be of play ground equipment- feeling very off-balance by a bridge or frozen with fear while climbing up to a slide thanks to his SPD. Michael gladly pushed Isaac on the swings for as long as he wanted, and during this time they managed to produce the best mother's day present I could have asked for; a conversation. Michael asked Isaac if he had any pets at home to which Isaac told him that he had a caterpillar (totally true). He asked what kind of caterpillar it was and Isaac said it was brown and black. He asked a few more yes or no questions and Isaac answered all of them. My kid was having a conversation with a nine year old boy right before my eyes. Michael never looked to us to clarify what Isaac was saying or what he meant about anything, because he didn't have to. Isaac was, for all intents and purposes, a completely typical 3 year old boy that day. I sat at the picnic table with tears in my eyes. Initiating reciprocal play with other kids and a conversation is the same as diamonds and a massage as far as Mother's Day gifts go for moms of spectrum kids. Best Mother's Day ever was brought to me by Andrew, Isaac, and 9 year old Michael. And for that, I'm grateful. I hope the mom on Reddit gets a Mother's Day this monumental next year.

Monday, May 9, 2011

Last week we were in NY visiting my side of the family for my birthday week. Yes, my birthday lasts all week; an indulgent tradition that my husband hasn't seemed to grasp even after seven years of sharing my birthday with me. I think the tradition started out of a childhood greediness for attention. I believe it continues out of necessity. Something has always trumped my birthday. Either I am sick, someone very close to me is sick, dies, or I had finals, tests, or something always went wrong on my actual birthday. Therefore, the rest of the birthday week is there to make up for whatever happened on the actual day.

This year I spent almost seven hours in silence in the car on my birthday. Andrew was engrossed in a marathon-long history lecture on his ipod. Isaac was being remarkably good in the backseat. And I was mentally preparing myself for what awaited me at home in NY; seeing my grandma laying in a nursing home. Two years prior I was shaking hands with strangers and hearing "I'm so sorry for your loss" when my grandpa died. And last year is a blur, but I'm almost positive that Andrew and I fought on my birthday. Don't worry, as I'm writing this I am completely aware that I'm starting to sound like an episode of Bethany Ever After or whatever that show is. Pick an emotional reality star and that's me on my birthday- minus the fake boobs and great thighs.

Anyway, on Monday 5/2/11, we went to see my grandma. To see her laying hooked up to oxygen and a catheter, face sunken, lips withered was incredibly sobering. She was visibly weaker than the last time I saw her, and the realization that she's really not going to live forever hit somewhere in my chest and rose up to my throat every time I looked at her. Yet the few hours we spent with her each day we were there managed to be very special. Isaac did not disappoint us with his usual charm. He sang nursery rhymes repetitvely the way he does when he gets stuck- like a high pitched, plastic, Fisher Price record player. And I caught grandma mouthing the words along with him, her eyes closed from sheer exhaustion. He managed to stage a game of hide and seek in her very small room. When we ran out of hiding places in about 5 minutes, he had Buzz and Woody play the game as a type of puppet show for her. She loved every minute, but the best moment of the day was when the nurse walked in and asked Isaac how old he was and he answered the question correctly for the first time ever. "I'm fwee years old." My reaction was the same as if he had recited the Declaration of Independence. And grandma got to witness this little victory for us. However, I think the best part of that day for her was when Isaac looked right at her and said, "Good-bye great grandma! Love you!" Her eyes were definitely open then and very, very bright. Isaac managed to keep me on the sunny side while in NY. His progress continues to make me eternally grateful, and I'm happy to report that grandma is looking a little better this week. What a great birthday gift.